Palliative and hospice care services produce immense benefits for patients living with serious illness and for their families. Due to the national shift toward value-based payment models, health systems and payers share a heightened awareness of the need to incorporate palliative and hospice services into their service mix for seriously ill patient populations. During the last decade, a tremendous amount of capital has been invested to better integrate information technology into healthcare. This includes development of technologies to promote utilization of palliative and hospice services. However, no coordinated strategy exists to link such efforts together to create a cohesive strategy that transitions from identification of patients through receipt of services. A Serious Illness Digital Ecosystem (SIDE) is the intentional aggregation of disparate digital and mobile health technologies into a single system that connects all of the actors involved in serious illness patient care. A SIDE leverages deployed health technologies across disease continuums and geographic locations of care to facilitate the flow of information among patients, providers, health systems, and payers. Five pillars constitute a SIDE, and each one is critical to the success of the system. The 5 pillars of a SIDE are: Identification, Education, Engagement, Service Delivery, and Remote Monitoring. As information technology continues to evolve and becomes a part of the care delivery landscape, it is necessary to develop cohesive ecosystems that inform all parts of the serious illness patient experience and identifies patients for the right services, at the right time.

Palliative and hospice care services produce well-known benefits for patients living with serious illness and for their families. Benefits include improved quality of life and reduced symptom burden, spiritual and emotional distress, and caregiver distress.

 Additionally, when integrated into usual care, palliative and hospice services result in savings to patients, caregivers, payers, and health systems, particularly from reducing avoidable hospital admissions and emergency department visits.

Due to the national shift toward value-based payment models, health systems and payers share a heightened motivation to incorporate palliative and hospice services into their service mix for seriously ill patient populations. For instance, health systems currently leverage palliative care specialists to complement other specialists (eg, pulmonologists, oncologists) as an extension of the care team to “provide an extra layer of support.” Palliative care specialists also provide oversight and accountability for patients’ issues ancillary to disease-directed treatments.

 In addition, health systems have integrated community hospice staff into serious illness delivery settings to socialize hospice care benefits with patients early in their disease progressions.3 However, despite an increased emphasis on these services, many patients who could benefit from palliative and hospice care do not access the care.

During the last decade, a tremendous amount of capital has been invested to better integrate information technology into healthcare.

 These investments include development of technologies to promote utilization or completion of palliative care services and activities. But the entrance of specialized solutions into the marketplace has created a fragmented mobile health landscape, as many solutions have been designed to solve narrow problems.

 For instance, health systems have invested in technologies that specialize in identifying patients with serious illness that, because of increased risk of poor outcomes (eg, hospitalization, death), may benefit from care by specialty palliative care services. Similarly, health systems have invested in technologies that guide patients through completing advance care planning documentation.

Although these solutions may solve discrete problems, no coordinated and comprehensive strategy exists to link such efforts together to create a cohesive approach that seamlessly transitions from identification of patients through receipt of palliative and hospice care services.

) is the intentional aggregation of disparate digital and mobile health technologies into a single system that connects all of the actors involved in serious illness patient care. A SIDE leverages deployed health technologies across disease continuums and geographic locations of care to facilitate the flow of information among patients, providers, health systems, and payers. A SIDE represents a holistic approach to serious illness patient and population management that eliminates barriers created by niche solutions, establishing a heightened level of connectivity between the patient and all other key stakeholders.

A SIDE recognizes the need of each component of the ecosystem to thrive, allowing the system to provide better insights into the patients it serves. Cyclical in nature, no single component of the ecosystem is more valuable than the next and cannot be optimized without the last. Five pillars constitute a SIDE and each one is critical to the success of the system. The 5 pillars of a SIDE are: Identification, Education, Engagement, Service Delivery, and Remote Monitoring.

Each pillar of a SIDE allows a health system to answer a specific fundamental question about their serious illness patent population. In such a population, the typical entry point for a patient into a SIDE is through the Identification pillar. This is where a health system, payer, or other accountable entity can answer the question, “How do we identify the right patients for palliative and hospice services?”

In the Education pillar, stakeholders can answer the question, “Now that we have identified patients who qualify for these services, how can we educate them on the benefits of these services?” While education is important, research shows that merely educating a patient on these services, if not accompanied by patient engagement, is ineffective in converting a patient into a user of palliative and hospice care services.

From the Education pillar, a patient transitions to the Engagement pillar, which answers the question, “Once we have educated the patient on the benefits of these services, how do we empower them to participate in palliative care or share their care preferences with their clinical team?”

As a patient and their caregiver(s) become further engaged in the patient’s care, we transition to the fourth pillar, Service Delivery, which answers the question, “How can we provide usable information to the clinical team to impact delivery of care?” This includes pre-visit assessments of unmet needs, priorities for care, and goals and preferences for the interactions with the palliative care team.

Finally, once an informed treatment plan is in place and a clinical encounter is completed, the patient moves to the fifth pillar, Remote Monitoring, where the SIDE answers the question, “How do we determine the health of a patient away from a clinical visit to ensure their continued well-being?”

As a patient transitions through all 5 pillars of the SIDE, patient, caregiver, and administrative data are being collected. These data are integrated back into the SIDE model to further inform the Identification pillar, allowing the system to continually learn from itself and better manage future seriously ill patients who enter the ecosystem.

Despite administrative measures to improve usage of hospice and palliative care services, it is often difficult for health systems to determine patient suitability and to time delivery of these services. Daunting challenges presented by prognostication difficulties and rapidly evolving treatment paradigms require that information

beyond clinician intuition and estimation be used. Utilizing “big data” is a potentially efficient way to synthesize medical information for a given patient and contrast it against data about similar patients within a population to accurately identify which patients would most benefit from palliative and hospice services.

Health systems that utilize predictive analytics, advanced algorithms, machine learning, and artificial intelligence are able to manage large patient populations. Rather than relying merely on clinical intuition and experiential prognostication, these tools often allow health systems to more quickly and accurately identify patients who are appropriate for these services by combining available data from administrative, billing, and clinical data sets. Coupling this analytic ability with clinical intuition allows health systems to initiate the process of enrolling the right patients into the right services at the right time, leading to improved patient outcomes and cost savings for the health system.

Systems in the marketplace have demonstrated that using a machine learning or artificial intelligence solution can increase efficiency, lower cost, and improve patient experience. Most notably, Stanford University established in 2017 that using a deep neural network and historic electronic health record information to mark patients who would benefit from palliative care could return prognostication at 3, 6, 9, and 12 months on a patient’s likelihood to die. Commercialization of such models provide clinicians with a prepopulated list that can be more than 90% accurate in predicting death in the next 3, 6, 9, or 12 months.

As patients are identified within a health system for palliative or hospice services, the next challenge becomes connecting them to these services. A key driver of the underutilization of palliative and hospice care services is a patient’s knowledge gap: having misconceptions about the benefits of these services, including hospice care and palliative care, and about how these services can be integrated into the usual care experience. In one recent large survey, 71% of patients could not accurately articulate the difference between hospice and palliative care, often confusing the care goals of the 2 services.

 For this reason, and possibly others, patients eligible for palliative care hesitate to enroll despite its benefits. This knowledge barrier carries similar implications for patients who may be eligible to receive hospice benefits.

To close the gap between patients who are identified for hospice and palliative services and the utilization of these resources, the Education pillar of the SIDE model emphasizes the need for patients to access targeted, understandable, just-in-time content. In multiple instances, digital health platforms have been successfully deployed to educate patients on the benefits of hospice and palliative care. For instance, PCforMe, a web-based mobile health platform, uses short videos to educate seriously ill patients on the benefits of palliative care, covering topics such as “What is palliative care?” and “How is palliative care different than hospice care?”

 Additionally, ACP Decisions has created and tested series of educational videos that prepare patients and family members to have discussions with their medical team about serious illness and planning for the future, and offer ways to incorporate these conversations into their treatment plans.

Education is an important first step in activating a patient; next, health systems must engage the patient in care planning with their clinicians. Historically, health systems have faced challenges in promoting active participation by patients and family members in planning their care.

 Utilizing digital tools in the SIDE model allows a health system to achieve the following with patients: (1) Contextualization: Patients need a space to contextualize the care services they need to their individual preferences; (2) Application: Patients need tools that will allow them to organize their thoughts into an action plan that can be shared with their clinical team; and (3) Empowerment: Patients need a mechanism to help them convey their preferences to their care team and to facilitate conversations that lead to actionable changes, ones that incorporate the patient’s preferences for their treatment plan.

To date, some of the most widespread use of digital engagement platforms in the serious illness space has been within advance care planning. Traditionally, health systems have had difficulty in messaging and operationalizing advance care planning, often leading to inaction and confusion among patients, providers, and family members during the most critical moments of patient care.

In response, patient engagement websites have been designed that use simple technology and social media to help patients create and share their advance care planning wishes with their clinicians. Further, technology companies have partnered with health systems to establish a simple patient engagement solution that facilitates the advance care planning documentation process for the patient and provides a universal repository system for advance care planning documentation. 

After a health system has identified, educated, and engaged patients and their families, how is this translated into service delivery for the patient?

Patients seek a more active role in sharing their preferences and in guiding clinical care that addresses their concerns, priorities, and preferences.

 The SIDE model recognizes that the information a patient provides is only as effective as the ability of the care team to execute their wishes. Clinicians need to collect information from patients in a way that allows them to easily locate, understand, and apply patient preference into their care plan.

Effective outputs from patient engagement tools must accomplish 3 goals for the clinician: Successful patient engagement tools focus not only on capturing the patient voice, but also the ability to impact service delivery for clinicians.

 For example, Cake, a web-based end-of-life planning tool developed by the Massachusetts Coalition for Serious Illness Care, first asks a patient to complete a series of questionnaires regarding end-of-life preferences. Then, the tool packages the patient’s

responses into a PDF packet that can be easily shared with the clinician, allowing the clinician to better understand how to incorporate the patient’s preferences into care planning.

Overwhelmingly, the majority of the patient experience with serious illness happens outside a clinical setting. Patient distress, symptom burden, and functional limitations are experienced away from healthcare professionals, often in their own homes alongside loved ones and informal caregivers. However, health systems have very little actionable insight for what is happening to patients while they continue their daily routine.

Often, during the weeks or months between clinical appointments, the well-being of patients with serious illness can drastically change. Therefore, at the time of a consultation with the patient, clinicians are obtaining a snapshot of information at that point in time, rather than longitudinal information around the time when the patient experienced the challenges. This can lead to a loss of valuable time for a patient and clinician, causing a lag in care that can impact numerous outcomes for the patient. For this reason, the final vital component of a SIDE is remote patient monitoring, which provides clinical insight into the well-being of patients to the clinical team in real time.

Traditional patient home-based monitoring has been primarily conducted by clinical staff using a telephone to perform checkups on patients or to reconnect with patients who call a triage line with a question or concern. While this technique can be helpful for patients and caregivers to obtain information, it presents limitations regarding how that information can be used to improve patient care. First, by nature, phone calls allow only for the capture of unstructured data, leading to variation in 

the capture and interpretation of the data. Second, because the data-capture method occurs outside of a technology platform, it is difficult to utilize these data to inform urgency of care or perform a needs assessment across a population. Lastly, as these data are not presented in a structured way into an analytics engine, the ability to learn based off its existing population and improve on its ability to identify patients is greatly limited. By structuring this process in a SIDE, we allow the system to accomplish the following: to (1) improve identification of patients; (2) integrate routine collection of data on distress, symptom burden, and functional impact using validated questionnaires that are shared with the clinical team; (3) allow patients to feel more connected to their clinical team as they are providing constant feedback away from the clinic; and (4) efficiently utilize clinical staffing resources.

As information technology continues to evolve and become a part of the care delivery landscape, it is necessary to develop cohesive medical ecosystems that inform all parts of the patient experience and align patients in the right services, at the right time. This is particularly important for patients suffering from serious illness. Application of a SIDE provides numerous benefits for patients, family caregivers, and health systems by optimizing appropriateness and timeliness of care, leading to an increase in utilization of palliative and hospice care services. 

The authors would like to acknowledge Duane Feger for his contributions in framing the Identification section of the manuscript and Anne Perez for her contributions in the design of the accompanying graphic of the manuscript.

JN is an owner and president of Prepped Health, LLC, and chief product officer of Acclivity Health Solutions Inc. JP is founder and chief executive officer of Acclivity Health Solutions Inc. NS is employed by Acclivity Health Solutions Inc. AK is an owner and chief executive officer of Prepped Health, LLC, and chief medical officer of Acclivity Health Solutions Inc.

Duke Cancer Institute (JN), Durham, NC; Department of Population Health Sciences, Duke University School of Medicine (HBB, KIP, GS), Durham, NC; Duke School of Nursing (SLD), Durham, NC; Acclivity Health Solutions (JP and NS); Center for Health Measurement, Duke Department of Population Health Management (BBR), Durham, NC; Duke Cancer Network (LS), Durham, NC; Duke Cancer Institute and Duke University Fuqua School of Business (AK), Durham, NC.

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Articles

Evidence-Based Oncology

The Need for a Serious Illness Digital Ecosystem (SIDE) to Improve Outcomes for Patients Receiving Palliative and Hospice Care

Following enactment of the Patient Protection and Affordable Care Act, the Center for Medicare & Medicaid Innovation (CMMI) was established to design and analyze payment models that would replace a fee-for-service reimbursement structure. To that end, CMMI launched reimbursement programs that use risk-adjusted budgets alongside quality-driven rewards to promote value and innovation at the care delivery level. These came to be known as alternative payment models (APMs).

APMs establish budget targets on the basis of either patient populations or care episodes, which creates an incentive for provider networks to cut total spending. APMs also use an array of quality metrics related to: (1) optimizing patient outcomes (eg, rates of hospitalization and mortality or attainment of disease-specific treatment goals), (2) improving health service delivery (eg, accessibility of services or adherence to gold standard therapies), and (3) increasing patient-centeredness (eg, utilization of advance directives or measures of patient satisfaction).

The changing fi nancial frontier has pushed our medical system to expand its reach to achieve healthcare’s Triple Aim as proposed by the Institute for Healthcare Improvement.

 For provider networks, this translates to off ering better and broader services but at a lower cost, an objective that is especially challenging when managing seriously ill patients. Seriously ill patients have an elevated risk of mortality, impairments in functional status, and/or medical conditions with burdensome symptoms. This patient population is growing in number and accounts for a vastly disproportionate amount of healthcare spending.

Health administrators and clinicians alike recognize that meeting the extensive medical and social needs of the seriously ill may no longer be the revenue boon it once was in the fee-for-service era. The transition to pay-for-performance, and especially the inclusion of downsided risk in APM reimbursement schemes, means practices will now face serious threats to long-term sustainability if they cannot meet quality metrics.

In response to the constellation of APM incentives, provider networks have strengthened their capacity to systematically identify and monitor their sickest cohorts. Some have even begun to predict adverse outcomes at the individual level, knowing in advance that a patient may be at high risk for hospitalization or death.

 However, even with the technological advances in the use of big data and predictive modeling, there is still uncertainty about how to best respond. In a survey of a large, representative sample of accountable care organizations (ACOs), Bleser et al discovered that 94% employ measures to defi ne their seriously ill populations, but that only 8% to 21% of ACOs have either “partially” or “widely” implemented clinical programs targeting these groups.

At this stage of system-wide reform, the question is not whether provider networks should augment our medical and social infrastructure for the seriously ill, but how. Looking ahead, it is clear that building the ideal future will require greater integration of palliative care principles. Insights from specialty palliative care would enable systems to better manage those patients who place the greatest demands on the system. Palliative care has a growing body of evidence demonstrating its contribution to our industry’s Triple Aim by lowering 30-day readmission rates, by reducing the total costs of care at end of life, and by increasing patient wellbeing and satisfaction.

More than a specialty, palliative care represents a philosophical approach to treatment that focuses on reducing suffering and increasing quality of life. Palliative care delivery comes in 3 levels: primary, champion, and specialty.

Primary palliative care is the common, fundamental palliative care delivered by every clinician to every patient with serious illness. It comprises basic symptom management and goal setting by which primary and specialty clinicians (eg, cardiologists, oncologists) are experienced and comfortable. Champion palliative care is provided by clinicians with additional training who serve as advocates for expanded palliative care services in their hospital units, clinics, and other local settings. Specialty palliative care is supported by clinicians who have undergone formal fellowship or other training that establishes an advanced expertise in the field.

A common misconception about specialty palliative care is that it is beneficial only when integrated into the care of the terminally ill. Although there is indeed a subset of palliative care that assists patients and families in the immediate phases before death, the scope of this discipline extends far beyond end-of-life care, such as hospice care. Afterall, a therapeutic emphasis on patient comfort and family support is relevant at all phases of disease, including as early as diagnosis.

Palliative care’s patient-centered approach tends to incorporate skillsets of multiple clinicians, such as physicians, advanced practitioners (eg, nurse practitioners, physician assistants), nurses, social workers, physical and occupational therapists, and chaplains. These team members off er care in a variety of settings, like hospitals, community clinics, or homes. The types of services encapsulated in a palliative approach are aimed at educating patients and families about disease trajectories, minimizing symptom burden, leading goals of care discussions, addressing conflict and mistrust, identifying surrogate decision makers, connecting families to community resources, and linking patients with home-based support. When delivered in a nonhospice context, these palliative measures take place alongside disease-targeted therapies, such as hemodialysis for advanced kidney disease, chemotherapy for cancer, or inotropes for heart failure.

For seriously ill populations, all medical encounters from the time of diagnoses onward should be regarded as potential opportunities to intervene in a palliative manner. The incentive to do so at earlier stages and in broader contexts is especially compelling when managing cohorts whose diseases have well-characterized patterns of progression. Examples include heart failure, lung disease, kidney disease, dementia, and advanced cancers, each of which has a pattern whereby hospital admissions may be harbingers for further or more rapid decline. As such, these hospital admissions also tend to mark the beginnings of “new baselines,”  since it is uncommon for seriously ill patients to return to the level of functioning they had prior to hospitalization.

The value of early palliative methods has been demonstrated by multiple APM-inspired outreach programs targeting seriously ill cohorts. For example, Vidant Health is an ACO serving a rural population that is socioeconomically disadvantaged. Catering to their sickest patients, Vidant Health has launched technology-assisted home monitoring systems, care alignment strategies, and community partnerships, typically with faith-based organizations. Together, these initiatives have generated shared savings through Medicare and have led to lower readmission rates, which declined from 10% to 20% to 1.5% to 5%).

 Another exemplar ACO, Facey Medical Group has designed a community-based program that includes a 24/7 call center, a palliative-trained physician, nurse practitioners, care managers, social workers, and chaplain services. They reported high levels of patient satisfaction, 68% fewer hospitalizations, and 55% fewer emergency department visits.

When seriously ill patients do experience a hospitalization, they are at greater risk of requiring intensive care. Evaluations of structured palliative programming in this setting help to demonstrate the profound impact of aligning care goals, an impact that could extend to other contexts of care as well. Kyeremanteng et al’s systematic review of formal palliative care consultations in intensive care units (ICUs) showed a reduction in ICU length of stay (LOS) compared with those who did not receive the consultations.

A separate systematic review and meta-analysis by Bibas et al examined a specifi c palliative intervention designating surrogate decision makers and found that doing so reduced ICU LOS among patients who die in the ICU.

 In both of these analyses, there was no impact on overall mortality, just diff erences in the choices and circumstances surrounding death.

To understand the impact at a more granular level, consider the results of Ma et al’s randomized, controlled trial of formal specialist consultations, which showed a substantial increase in code status changes and in transfers to hospice, along with reductions in ventilator days, number of tracheostomies performed, and rates of postdischarge emergency department visits or readmissions.

Taken together, these study results suggest that palliative consultations uncover patient- or surrogate-driven desires to limit aggressive therapies— desires that otherwise may go unrealized. Indeed, it is largely through this improved communication regarding expectations, prognosis, preferences, and resources that palliative medicine programs have been able to reliably boost levels of patient and family satisfaction.

In these studies, the documented benefi ts of specialty palliative care compared with standard of care (ie, some version of primary palliative care) stem from multiple factors, many of which are structural in nature. Although there may have been some discrepancies in the depth and breadth of knowledge about possible tools in the palliative care toolbox, the observed diff erences in care patterns that accompanied specialist consultations were likely mediated by more than just clinicians’ board certifi cations. What specialist consultants can also bring to the table is their dedicated time and attention, commodities that are in short supply for primary teams with high patient volume and complexity.

As provider networks strive to expand their palliative services, they will have to determine the circumstances in which primary palliative care will suffi ce and those in which champion and specialist services would be more efficient and efficacious. With our nation’s growing number of seriously ill patients and with the increasing use of predictive analytics, we may begin to lean more on dedicated palliative teams to navigate the ever-important goals of care conversations and the ethics of sharing or withholding life expectancy estimates with the individuals we strive to serve. But whether it is through enlisting primary providers, building the champion workforce, or hiring more specialist consultants, there is no question that palliative programming will need to remain at the heart of our healthcare system’s quality transformation.

MRS is a primary care resident, Duke University School of Medicine; NAB is a research

scientist with appointments at the Duke University School of Medicine, Duke’s Sanford School

of Public Policy and the Durham VA Healthcare System; TWL is a cell therapy and hematologic

malignancies specialist and palliative medicine specialist, Duke University School of Medicine

and Duke Cancer Institute; KCO, with the Duke University School of Medicine and the Duke

Cancer Institute, is the founding director of the DCI Center for Onco-Primary Care and the

director of the DCI Supportive Care and Survivorship Center; KIP is with Duke University

School of Medicine and the Duke Department of Population Health; JDT is with Duke

University School of Medicine; and AHK is with the Duke Cancer Institute and the Duke Fuqua

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Whether it is through enlisting primary providers, building a champion workforce, or hiring more specialist consultants, there is no question that palliative programming must be at the heart of our healthcare system’s quality transformation.

Why Palliative Care Is the Answer to the Serious Illness Question in Payment Reform

Starting in 2019, Medicare Advantage (MA) plans were allowed to change with the times and offer new social benefi ts to support patients with serious illness or chronic conditions, such as home-based palliative care.

But the lack of clarity about these benefits has limited uptake by consumers, experts say. In December, CMS proposed funding the hospice benefit differently, which would allow MA plans to “carve in” to this benefit. Although some say this could help seniors in the long run, in the near term it has created uncertainty about how the government will fund care for the seriously ill.

Recently, more upheaval came to hospice providers with coronavirus disease 2019 (COVID19), which was addressed in the $2.2 trillion fiscal package; the bill included provisions for hospice to be delivered by telehealth and other relief.

Amid this unrest, the need for palliative care and hospice grows, especially for those with cancer. Cancer is the 10th most common condition for MA beneficiaries with 5.1% of all benefi ciaries having cancer and 1.3% of all with no other conditions, according to the Medicare Payment Advisory Commission (MedPac), an independent agency set up by Congress to examine issues surrounding Medicare.

 It is also the second leading cause of death in the nation, asserts the Centers for Disease Control.

Data from CMS show that between 2000 and 2017, the share of Medicare decedents who elected hospice rose from 22.9% to 50.4%, or from 534,000 to 1,492,000. Lengths of stay also jumped, suggesting a need for palliative services whether or not patients are receiving them.

But when people do sign up for MA plans, the copays and absence of specific services can cause seniors to forego treatment their physicians say they need. The lack of understanding of what palliative care is can often be the first hurdle.

“Consumers may not be aware their health plan has palliative care services. In the current healthcare environment, there is no standard palliative care benefit. Some MA plans are providing palliative services but there is variation in what that includes. Some programs are more telephonic case management,” said Lori Bishop, vice president of Palliative and Advanced Care for the National Hospice and Palliative Care Organization (NHPCO), in an interview with 

NHPCO is urging that the confusion be reduced by requiring MA plans to use a standard defi nition of palliative care, she said. Creating palliative care standards provides guardrails for consumers. “This standardization also protects the plan by ensuring a base level of quality,” Bishop said.

The NHPCO executive said she can tell there is also a lot of confusion among consumers about the diff erences between palliative care and hospice care just from the phone calls she gets “We need to do a better job of connecting people to the right service at the right time. People are getting connected to palliative care sometimes too late and what they really need is hospice care,” said Bishop.

Plans Have Flexibility, but There’s Confusion

MA plans gained the authority to off er expanded benefi ts in 2018, when Congress enacted the Creating High Quality Results and Outcomes Necessary to Improve Chronic (CHRONIC) Care Act.

Palliative care was just one of the expanded services permitted under the act.

Today, MA commercial health plans give payers little more flexibility for cancer care than traditional Medicare, said Regional Cancer Care Associates President and Chief Executive Officer Terrill Jordan, who manages 123 physicians in New Jersey, Maryland, Connecticut, Washington, DC, and Pennsylvania. The flexibility comes in the ability to off er different types of arrangements, more alternatives for customers. As an example, Jordan told 

™ in an interview that MA plans can offer lower premiums in exchange for higher deductibles.

MA plans can pay for home healthcare for high-risk individuals whom traditional Medicare would not cover. As a way to improve care and lower costs, Jordan said the plans can direct patients to wellness programs to control risk factors for cancer such as diabetes and encourage behaviors that can reduce the incidence and severity of cancer, such as losing weight and eating healthier diets.

But in December 2019, the Duke-Margolis Center for Health Policy confi rmed Bishop’s observations,

 reporting that after 2 years only a small number of MA plans were off ering palliative care benefi ts, citing operational challenges and contractual issues. Two years after implementation, the DukeMargolis study found, only 63 plans off er adult day care services and 58 offer palliative care, including “home-based palliative care.

The report’s coauthor, DukeMargolis research assistant Hannah Crook, said the confusion is acute. “There are some general misconceptions about palliative and hospice care. There’s a tendency for individuals to think they are the same thing or that you have be near the end of life to receive palliative care,” Crook told 

. “It will be important to continue examining how plans are rolling out palliative care benefits and how plans and providers help individuals understand what is being offered under a palliative care benefit.”

When it comes to palliative care off erings in MA plans, Crook said there is a wide variability. “One plan may off er a comprehensive suite of services with medical, social, spiritual, and other supports,” she explained. 

The Duke-Margolis authors noted that starting with their 2019 offerings, MA plans were given new fl exibility to off er benefits that improve people’s health and ability to live independently, including in-home palliative care, even if those benefits are not traditional medical services.

But the authors found the takeup rate by the plans for palliative care was much smaller than the number one supplemental benefit increased: caregiver support. They predict that in-home palliative care will continue to be a low priority for plans in the starting years of the new fl exibility as they set their sights on “low-hanging fruit” that are less costly and easier to deliver.

However, the authors said the detailed off erings of palliative care by plans are not being revealed in initial data. “For example, one plan may off er a holistic suite of services under its palliative care benefit, including home-based services by specialty-trained palliative care clinicians, a 24/7 call center, a multidisciplinary team with social workers and chaplains, and integrated pain management. Another plan’s palliative care benefi t may only include more basic services, such as a hospital-based consultation with a clinician (regardless of training) who discusses a person’s goals of care,” the report states.

Before the advent of the new fl exibility in Medicare Advantage, the authors said a palliative care benefit was almost exclusively offered by Medicare-Medicaid Plans, and those that did were steadily declining.

With the CMS change, 15 standard MA plans noted that they off ered a “palliative care” benefit, and 8 indicated they off ered a “home-based palliative care” benefit in 2019. The numbers increased to 61 (including 58 standard MA plans) plans claiming they off ered a palliative care benefit for 2020, with all plans specifying it as “home-based palliative care.”

The academics predicted an increase in the number of MA plans off ering palliative care services beginning next year. That will be due to another anticipated change: the MA Value-Based Insurance Design (VBID) pilot, which was fi rst presented last year then outlined in a CMS proposal for a carve-in in January.

Right now, when a person with MA coverage needs hospice, a “carve out” provision allows fee-for-service (FFS) Medicare to cover certain services. Hospice providers say the system has worked well, but the CMS website says this results “in a convoluted set of coverage rules for MA enrollees,” and that the current system “fragments accountability for care and fi nancial responsibility across the care continuum.”

Under the MA VBID initiative, insurers that offer MA plans are required to test wellness and health planning components, and beginning in 2021 they have the option of adding hospice benefi ts to the Part A package.

Stakeholders have concerns. Long before the disruption of COVID-19, NHPCO had asked for a delay, saying that although the idea for the carve-in makes sense long-term, there was not enough time to prepare for such a major change.

 There were also complaints that the Center for Medicare and Medicaid Innovation had not off ered enough details about what it wanted before MA plans were to apply to take part.

The Duke-Margolis authors see the MA VBID as an improvement, saying plans will be able to offer members a longer continuum of serious illness care, with palliative care preceding hospice. Many MA plan executives they spoke with, especially those with off erings in a number of regional markets, were looking at implementing small-scale pilots.

“This approach allows the plans to carefully monitor implementation and gather data that can inform benefi t pricing. If these eff orts are successful, they can be brought to scale and to different markets as formal benefi ts,” according to the report.

Whatever the fate of the hospice carve-in, MA plans have their critics, including one oncologist with experience developing alternative payment models. “If all the Medicare Advantage programs went away tomorrow, I would be thrilled. They have all the disadvantages of commercial insurance without enough money to manage patients,” said Barbara L. McAneny, MD, immediate past president of the American Medical Association, who developed the COME HOME oncology care model at the New Mexico Cancer Center.

Prior authorization in MA and all forms of commercial health insurance harms patients, wastes time and money, and creates burdens for medical staff, McAneny said. She has never known an MA plan to deny a request, so the delays prove pointless, serving only to keep patients from getting treatments when they need them. By contrast, Medicare FFS pays quickly and doesn’t make oncologists preauthorize all the tests.

“Get rid of prior authorizations. Care should come on systems that are electronic, instant, and evidence-based on medical evidence, not financial evidence,” she said.

She also objects to a recent CMS change that allows MA plans to permit step therapy, which allows plans to deny more expensive drugs even if physicians believe they are the most effective. “It’s terrible,” she said. “Fail first is costing patients quality and quantity of life by using old drugs.”

However, America’s Health Insurance Plans (AHIP) Vice President for Medicare Policy Greg Berger said MA is one of the nation’s most successful healthcare programs with over 23 million participants and a 93% satisfaction rate—satisfaction due to more benefits, better access, and better value to seniors.

He said peer-reviewed research has found MA plans have outperformed the traditional Medicare program on 16 out of 16 clinical quality measures, including breast and colon cancer screening. Berger acknowledges that prior authorization has flaws, which AHIP wants to cure. The trade group noted most physicians still use manual processes to request prior authorizations, despite the common availability of online submission portals.

In January, AHIP launched the Fast Prior Authorization Technology Highway (Fast PATH) to speed up prior authorization requests, responses, and information exchange. Anthem, Blue Shield of California, Cambia Health Solution’s affiliated health plans, Cigna, Florida Blue, and WellCare, who have over 60 million people in their plans, have signed up.

With Surescripts technology, doctors will have critical information at their fingertips when a patient is in the offi ce to help prescribe medications. “Reducing surprises at the pharmacy counter and making it more likely the patient will receive and take the medication. Together, this should promote better patient outcomes,” the AHIP

The greatest challenge faced by health plans, providers, and consumers alike with MA plans and cancer care is the rapid increase in drug costs, said Andrew Hertler, MD, chief medical offi cer at New Century Health.

Spending on cancer drugs in the United States reached nearly $57 billion in 2018, which represented a 2-fold increase from 2013, he said. Cancer care now represents 12% of all costs for Medicare populations and is rising annually at 8% to 10%, said Hertler, who advises on costs for 8000 oncologists in 39 states.

He estimates about one-fourth of cancer patients delay getting a test or treatment due to cost. 

“Too often I hear stories of patients in Medicare Advantage plans who cannot afford their co-payment for drugs, even though the maximal out of pocket would seem quite modest,” he said.

1. CMS finalizes Medicare Advantage and Part D payment and policy updates to maximize competition and coverage [press release]. Baltimore, MD: CMS newsroom; April 1, 2019. cms.gov/newsroom/press-releases/cms-finalizes-medicare-advantage-and-part-d-payment-and-policyupdates-maximize-competition-and. Accessed March 27, 2020.

2. Center for Medicare and Medicaid Innovation. Introduction to the CY2021 hospice component: VBID model information session. innovation.cms.gov/Files/slides/vbid-hospiceintervention-slides.pdf. Accessed March 27, 2020.

3. Parker J. Senate approves stimulus package with relief for hospices. Hospice News. hospicenews.com/2020/03/26/senate-approvesstimulus-package-with-relief-for-hospices/. Published March 26, 2020. Accessed March 27, 2020.

4. Report to Congress: The Medicare Advantage program: status report. Chapter 13. Published May 2014. medpac.gov/docs/default-source/reports/mar14_ch13.pdf. Accessed March 27, 2020.

5. Centers for Disease Control and Prevention. Leading causes of death. CDC website. cdc.gov/nchs/fastats/leading-causes-of-death.htm. Updated March 17, 2017. Accessed March 27, 2020.

6. S.870. Creating High-Quality Results and Outcomes Necessary to Improve Chronic (CHRONIC) Care Act of 2017. 115th Congress. 

7. Crook H, Olson A, Alexander M, Roiland R, Japinga M, Boucher N, Taylor Jr DH, Saunders R. Improving serious illness care in Medicare Advantage: new regulatory flexibility for supplemental benefits. Duke Margolis Center for Health Policy.  healthpolicy.duke.edu/sites/default/files/atoms/files/dukereport_supplementalbenefits_for_final_signoff.pdf. Published December 2019. Accessed March 27, 2020.

8. Centers for Medicare and Medicaid Services. Medicare Advantage Value-Based Insurance Design Model. CMS website. innovation.cms.gov/initiatives/vbid/. Updated March 24, 2020. Accessed March 27, 2020.

Benefits newly available under Medicare Advantage are not well-known to consumers and uptake has been limited. At the same time, CMS has propsed funding the hospice benefit differently, which would allow MA plans to “carve in” to this benefit, creating additional uncertainty. 

Lack of Clarity on Medicare Advantage Palliative, Other Cancer Care Benefits Limits Consumer Uptake

The elbow bumps shared at the Tampa Hilton Downtown on March 5, 2020, foreshadowed what was to come: this would be the last large gathering for a while at which oncologists from across Florida Cancers Specialists (FCS) would be able to join with physicians and other stakeholders for a strategy session on what this group does best: bringing value to cancer care.

“Quest for Value: Advancing Oncology Value-based Care,” this year’s first installment in the Institute for Value-Based Medicine (IVBM) from 

, zeroed in seniors, a population that’s growing not just in Florida but across the United States. US Census Data show that by 2030, about 1 in 5 Americans will be 65 years or older.

 Older Americans are more likely to develop cancer, but thanks to better detection and treatment, they are more likely to survive cancer, too.

If everyone has a better than 1 in 3 chance of developing cancer in their lifetime,

 then care for a senior with cancer is a shared responsibility. There’s an oncologist and the primary care physician. There’s the payer who enrolls the person in health plan, and there’s the pharmacy that may see the patient the most—not just for prescriptions, but also for supplies, personal products, or a routine question.

All were represented at the Tampa event, which featured:

• Lucio Gordan, MD, president and managing physician, FCS

• Sam Asgarian, MD, former head of Clinical Health Products and Services, CVS Health

• Ray Parzik, director of Network Programs, Florida Blue 

• Jeff rey Lowenkron, MD, MPP, chief medical officer, The Villages Health

• Michael Diaz, MD, assistant managing physician, FCS; president, Community Oncology Alliance

• Maen Hussein, MD, physician director of finance, FCS 

“Quest for Value: Advancing Oncology Value-based Care,” this year’s first installment in the Institute for Value-Based Medicine (IVBM) from The American Journal of Managed Care®, zeroed in seniors, a population that’s growing not just in Florida but across the United States. Older Americans are more likely to develop cancer, but thanks to better detection and treatment, they are more likely to survive cancer, too.

April 2020

The Need for a Serious Illness Digital Ecosystem (SIDE) to Improve Outcomes for Patients Receiving Palliative and Hospice Care

Why Palliative Care Is the Answer to the Serious Illness Question in Payment Reform

Lack of Clarity on Medicare Advantage Palliative, Other Cancer Care Benefits Limits Consumer Uptake

In Florida, Serving the Senior Population in Oncology Means Working Together

Putting the Patient Back at the Center of Patient-Centered Care

CONFERENCE COVERAGE: Association of Community Cancer Centers 2020

AJMC® INTERVIEWS: Faculty From the Institute for Value-Based Medicine

Medical World News: April 2020

BOOK REVIEW: One Oncologist's Journey With a Patient to the Outcome We All Face